What is Mycosis Fungoides? - Ep. 2

Mycosis Fungoides—it sounds rare because it is. In this episode, I break down what this disease actually is, how it affects the body, and what it’s like to live with a cancer most people have never heard of. I’ll share my diagnosis journey, the symptoms that led me here, and the challenges of navigating treatment options for a condition that doesn’t have a one-size-fits-all approach. Whether you’re newly diagnosed, know someone with it, or just want to understand more about rare diseases, this episode is your crash course in Mycosis Fungoides.

Episode Transcript

Kelly Paul (00:01):
You look fine, but you're not fine, and that's
exactly what we're here to talkabout. Welcome to Fine, But Not
Fine, the podcast aboutnavigating rare disease,
healthcare battles, and themessy reality of chronic
illness. I'm Kelly Paul, andI've been living with Mycosis
Fungoide since 2015. This is aspace for real talk, real

(00:24):
experiences, and practicaladvice, because surviving is one
thing, but figuring out how toactually live, that's the hard
part.
Hey everyone, and welcome backto Fine, But Not Fine. If you
listened to episode one, youalready know a little bit about

(00:46):
my story, how I was diagnosedwith a rare disease, ignored my
first call from my doctor, andended up scribbling notes on
sticky notes while trying toprocess it all. But today, I
want to take a step back andtalk about the disease itself,
Mycosis Fungoides.
One of the biggest challenges ofhaving a rare disease is

(01:07):
explaining it to people andsometimes even doctors. The name
alone usually throws medicalprofessionals back to their med
school days. Mycosis Fungoidessounds like some kind of fungal
infection, but spoiler alert, ithas nothing to do with fungus,
because it's actually a form ofCutaneous T-Cell L, and we

(01:31):
abbreviate that as CTCL, whichmeans it's a type of blood
cancer, but it primarily affectsthe skin. And because it's rare,
even many healthcare providersjust don't fully understand it,
which can make getting the rightcare even more complicated.

(01:51):
Now, before we dive in, I needto say this. I am not a doctor.
My primary career is marketing.I'm just someone who's been
living with this for years, morethan a decade, and I'm sharing
my personal experience now. Ifyou have questions about the
patient experience, I've gotyou. If you have medical

(02:13):
questions, go see your doctor oryour specialist. That is their
job. It is not mine.
All right, let's get into it.Now, in this episode, I'll break
down what Mycosis Fungoides isand where it fits in the world
of cutaneous lymphomas. How manypeople have it, and why it's

(02:35):
often misdiagnosed, what stagingmeans for this disease, and
where I fall, how it affects mepersonally, on my skin, the
treatments I've tried, what'sworked and what hasn't, and some
resources if you or someone youlove has this diagnosis.

(02:57):
So let's start with the basics.Mycosis, Fungoides is a form of
Cutaneous T-Cell Lymphoma, thatCTCL abbreviation I mentioned,
and that is a type ofNon-Hodgkin's Lymphoma that
affects T cells. It's a part ofour immune system. But instead
of showing up, say, like youmight think, you have swollen

(03:20):
lymph nodes as a starting point,like many other blood cancers,
this one primarily affects theskin.
Now, CTCL as a whole isextremely rare. Only about 3,000
to 4000 people in the US arediagnosed each year, and Mycosis
Fungoides is the most commontype of CTCL, but most common

(03:43):
still means it's incredibly rarecompared to other cancers, and
it often starts with patches orplaques on the skin. Dry, itchy,
discolored areas that reallylook like eczema, psoriasis or
just weird skin spots that won'tgo away.And that's why so many

(04:04):
people go years before gettingthe right diagnosis. And for
some people this, the diseasestays in the skin indefinitely.
But the reality is, it canprogress.
Now, like many cancers, MycosisFungoides is staged, and staging

(04:25):
helps determine how widespreadthe disease is and what
treatment options make sense.But staging in mycosis fungoides
is a bit different than in othercancers. It's more about how
much of your skin is affectedand whether it's moved beyond
your skin, so there are numbersand letters.

(04:46):
So for example, in Stage 1, youhave stage 1A and stage 1B, 1A
is raised red patches, and thesepatches are called
patches/plaques, and they inthis stage one a. A, they would
affect less than 10% of the skinon your body. In 1B the plaques

(05:07):
would affect more than 10% andthen you get into stage two,
which is kind of like stage one,but maybe you have enlarged
lymph nodes, or maybe in 2BYou're getting small tumors on
the skin, but lymph nodes aren'teffective. And then you get into
3, which is more widespread andat least a tumor. And your lymph

(05:30):
nodes may be swollen, but theydon't have cancer in them yet,
4, where cancer has spread tothe lymph nodes or blood or
other organs, think like theliver or lungs.
Now, for me, right now, I'mstage 1A, and that means that
less than 10% of the skin on mybody is affected, and it hasn't

(05:53):
spread to lymph nodes or organs.And that's a really good place
to be, because I don't want thatto happen. And early stage
disease is really they call itindolent. It's very slow moving,
and the treatment options aremuch, much less aggressive. But
as I'll get into, that latertreatment is still a journey,
and it's really not alwaysstraightforward for me.

(06:17):
Mycosis, fungoides first showedup on my skin, these little,
tiny patches that wouldn't goaway, and they were dry and
really, really, really itchy,and they would kind of grow, and
if I try and put a cream on it,it might sting or something
wasn't right. It was never quiteright. It didn't react like a
typical rash would that I couldget rid of. And I had them for a

(06:39):
while before I finally got abiopsy that actually confirmed
what it was.
And I have gone through phaseswhere I've had, we call them
flares, right? And they getreally crazy and really big, and
then, you know, everything isfine. And then, depending on how
treatment is going, you know,one thing happens or another
thing happens. And now I'm at aspot where I have some patches

(07:02):
that are very much like theywere when I was first diagnosed,
in some especially the one on mylower leg, it's pretty much my
calf down to my toes thatsometimes, and I know this is
not for real, but sometimes it'slike is there would voluntary
amputation work to get rid ofthe itching and the pain,

(07:23):
because it can be actuallypainful to touch. And I know
that's, you know, kind of anexaggeration, but when you're at
the end of your rope and you'rescratching your skin so much
from itching that it's bleedingand it's scabbing and it's
weeping, and you don't want itto get infected, and it makes me
cry sometimes, because that'show bad it can be and how bad

(07:44):
this particular area is on myleg.
Now, since there's no cure,treatment is about managing
symptoms and slowingprogression. And let me tell
you, I've been through a fewdifferent treatments with mixed
results. Really, my first bigtreatment, though, it was narrow
band UVB, light therapy, orphoto therapy, NBUVB. And it's

(08:10):
the best way I can think of todescribe it is it's like a
medical tanning, you know, Istand in a light booth and I get
controlled UV exposure. And I'vedone it both in the clinic and
at home, because I do have ahome machine, and while it
helped with my skin lesions, andit did for a very long time,

(08:32):
there is some concern with doingthis kind of light treatment
perpetually, because therehasn't been research done on the
other impacts, and I haveactually had a pre cancerous
skin lesion removed, and that'salways sort of this concern, how
much light is too light? Okay,too much light.
I've also done topicaltreatments. These include

(08:53):
topical steroids to control theinflammation and topical
chemotherapy. I think thetechnical name is a
Meclorethamine. We also call itnitrogen mustard, yeah, like
World War One kind of stuff, andit slows down the skin cell
changes. And they helped, butthey they just weren't enough on
their own. And I still do use atopical steroid today when I

(09:17):
have a patch, a new patch orsomething that comes up, and try
to use that.
I have also done methotextrate,it's a kind of an oral
chemotherapy. My liver wasn't afan, so that was very short
lived. I had another oralmedication, probably in the
winter of 2022, and it reallyjust gave me crippling
headaches. So that one gotscrapped, and I'm currently

(09:38):
using targretin, which is alsoan oral chemotherapy. It's
technically a retinoid, which isa vitamin, a derivative that's
used for ctcl, and like in thebeginning, it was like magic.
It's like everything kind ofwent away, and it was really
awesome, but the results havediminished, and I.

(10:00):
I'm going to have to move on toanother treatment, and some of
these treatments like thistargretin, and right now I
actually have to get through aspecialty pharmacy. And let me
tell you, they are very, veryexpensive. We're talking
thousands of dollars a month, iswhat I see on the bill that gets

(10:23):
sent to insurance. I have to payhundreds of dollars based on my
insurance.
And what I'm waiting for rightnow is my next treatment, which
would be interferon therapy.It's right now in the drawn-out
pre authorization, denial,denial, and now external review
phase, but when we get throughall of this, this would be a

(10:45):
weekly injectable that shouldprovide me some relief.
Okay, now it's important to knowthat if you or someone you love
has this disease, you are notalone. There's some great
resources out there, includingthe cutaneous lymphoma
foundation. Their URL iscutaneouslymphoma.org There is

(11:06):
the lymphoma ResearchFoundation, which is
lymphoma.org and the NationalOrganization for Rare Disorders.
I believe it's rarediseases.org.
Now that's my super quickrundown on Mycosis Fungoides,
what it is and how it affects meand what treatments I've been
through. In my next episode, I'mgoing to tackle workplace

(11:30):
disclosure and weighing what totell your employer about your
condition.
Thanks for listening to Fine,But Not Fine. If this episode
resonated with you, subscribe soyou don't miss what's next. And
if you've got a story, question,or just need to vent, reach out.
I'd love to hear from you untilnext time, take care and keep on

(11:53):
going.